jmgoyder

wings and things

Love story 115 – Sedation

Before I became a lecturer in literature and writing, I worked as a nurse in nursing homes and I used to be disturbed by the amount of sedation given to people with dementia. Now I understand much more clearly why.

This evening the nursing lodge staff rang me so that I could speak to Anthony and he was, once again, agitated, confused and mumbling conspiracy theories about what ‘they’ were doing to him. Again, he didn’t know where he was so I tried to reassure him, spoke to the evening nurse (I now call her ’24/7′) who was by his side, then to him again, then got off the phone stunned at the rapidity of his descent into dementia.

Earlier in the day I had rung the morning nurse to discuss the evening confusion problem and she said they were going to get a urine sample because Anthony might have a urinary tract infection. I had wondered this myself as I already knew that these kinds of infections can send someone who already has a brain disease into crazyland.

But tonight, after the jumbled conversation with Ants, I waited until I had calmed down a bit, then  I rang ’24/7′ back to have a private chat and she told me the urine test came back clear.

This means that Anthony does not have a urinary tract infection.

This means that we are now facing what I already knew was coming (but Anthony didn’t), the dementia of Stage 5 Parkinson’s Disease. It has been lurking there for some time but now its jaws are wide, its fangs are sharp and it is out to get him.

’24/7′ told me he had refused his dinner, had become belligerent and was difficult to calm down.

We need sedation.

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What next!

Two phonecalls tonight with Anthony.

I rang him at 7.30pm to say goodnight then he got a nurse to ring me at 8.30pm. During both conversations, Ants was convinced that I was having an affair and that everyone was telling him that. I thought he was joking to begin with, then realized he was serious. He said, “Jules, I have the shakes.” I kept saying not to be so ridiculous and, luckily, the nurse was there in the background of the second phonecall to reassure him.

This evening confusion thing is escalating and now we have a brand new ingredient: jealousy.

Anthony: It’s that man they told me about.

Me: What man? Who told you? What are you talking about?

Anthony: He kissed you.

Me: Nobody kissed me, Ants, please Ants, are you kidding around?

Anthony: Okay, Jules, sorry, I was just pulling your leg.

Me: Well, it’s not funny – don’t joke with me Ants like that – please!

Anthony: So where are you now? Is he there?

Me: Who? Ming?

Anthony: No, that guy we were just … that guy, that man … Jules I love you.

And it went on like this for awhile until the nurse intervened, reassured me on the phone and gave it back to me to say goodnight to Ants.

It is going to be okay. I know all about dementia so I am prepared but this jealousy is so new it flabbergasts me.

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Love story 114 – ‘Andony’

As a two-year-old, Ming gave much more of his affection to me than he did to Anthony. So, for awhile it seemed like I was the privileged parent. Sometimes I even worried (although somewhat smugly!) that Anthony might become jealous of the multiple kisses I received from Ming, compared to his own daily ration of one, maybe two.

But it wasn’t Anthony who became jealous; it was me! Why? Because, as Ming approached the age of three and began to acquire more and more words, I remained fixed in his vocabulary as ‘Mummy,’ whereas ‘Daddy’ became ‘Andony’.

My envy was made worse by Ming’s clear reasoning when I told him, rather shyly, that he could call me ‘Julie’ if he wanted to.

“But you’re just Mummy, Mummy – NOT Julie,” he said very definitely. He looked at me quizzically, obviously wondering if I understood or not.

“So how come you call Daddy ‘Anthony’?” I asked, hesitantly.

“Coz Andony is my bestest fren,” Ming said. Again, the slightly ironic frown.

I’m ashamed to say that my secret jealousy of the mateship between Anthony and Ming worsened over the ensuing weeks. Then, just as suddenly, it dissipated when one evening the brightness of their relationship clarified itself and I understood.

Ming was sitting on Anthony’s knee, and they were watching cartoons. I joined them, sitting across the room, and, out of the corner of my eye, I saw Ming deposit a series of soft kisses onto Anthony’s cheeks, then stroke his head with delicate, though bongo-style, pats.

It had been ages (a couple of days, I think!) since Ming had given me that sort of affection and I felt a mixture of yearning and bright, fluorescent, green envy.

I turned and caught Anthony’s eye. Ming saw the look and, perhaps thinking that I, too, wanted some attention, he tumbled off Anthony’s lap and toddled over to me. Well, it’s about time, I thought to myself.

“Mummy,” he whispered, climbing onto my knee, “I can ownee give you one kiss.”

“Why is that?” I exclaimed – a bit too forcefully perhaps.

“Because!” Ming said, alarmed at my tone but still with that wise-owl look on his face, “Andony is my bewful, bewful son.”

He kissed me benevolently once on the cheek, then hopped down and toddled back to Anthony’s lap, calling back to me over his shoulder, “You’ll be awight, Mummy, you’re a vewy big girl now.”

The day Ming was born

The three of us

The thing is that Ming has no recollection of these days. He only vaguely remembers running from one side of the room pictured above and flying into Anthony’s lap – constantly! He now calls Anthony ‘Dad’. He was glad not be home this morning for the excursion event.

For awhile I wrestled with myself about whether to force Ming to come with me to visit Ants more often but, as a friend recently pointed out to me, not many 18-year-olds want to spend time with their parents anyway so it’s not such a big deal. So I don’t push Ming anymore and I certainly don’t make him feel guilty about his disengagement from Anthony, and, fortunately, Anthony is content to see Ming occasionally or else speak on the phone.

So the ‘Andony’ days are well and truly over and that is okay because it has to be okay.

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Love story 113 – When a phonecall brings you to your knees

It is happening more and more often now – this evening phonecall from Anthony to tell me he is lost and asking me when I am coming to find him and bring him home.

Obviously it isn’t Ants who rings me because he has forgotten how so I usually speak to him and then to the nurse looking after him and then to him again.

It always ends up okay for him because I manage to reassure him and then the nurse reassures me too.

Usually I am okay because I know now that Ants’ evening confusion is pretty regular, and the staff are wonderful to ring me on his behalf.

But tonight, after reassuring Ants that I would see him tomorrow and him saying, “Okay, my beautiful girl”, I hung the phone up and my knees buckled.

I got up and went outside to feed the birds and  they surrounded me while I threw bread, distributed wheat, and sobbed for my lost husband.

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Love story 112 – The most beautiful man in the world

This photo was taken a few years ago before the Parkinson’s Disease kicked the guts out of us.

I miss this Anthony so much.

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Love story 111 – Sorry

Some people can’t say this simple word, ‘Sorry’.

Anthony got a nurse to ring me the other night just so he could say it to me: “Sorry, Jules.”

“My ‘sorry’ is bigger than yours,” I quipped before we said goodnight,

Sorry.

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Love story 110 – Inseparable

Less than two years ago it was unthinkable that the day would come where Anthony would have to go into a nursing lodge. I vividly remember making a secret appointment with our doctor to discuss his deterioration and, after arranging Silver Chain respite help that day, Ming and I went into town. During the conversation with the doctor, he mentioned the inevitability of nursing home care and Ming, nearly crying, said, “No, we will never put Dad into care.” The doctor gently said to him, “You don’t know what is coming.”

And we didn’t. All three of us could never have predicted how bad it would get – hallucinations, immobility, stroke-like episodes, falls, loss of hand/eye coordination, confusion, nightmare horrors, sleepless nights, sleep-filled days, loss of appetite, subsequent dramatic weight loss, confusion, cognitive problems, ablutionary problems … and the list goes on. Ming transformed from a devoted son to an intolerant son and I transformed from a devoted wife to a physical and mental wreck. But I only see that now – in hindsight.

The things I wish:

  • that I had stopped asking Ming to do occasional ‘night shifts’ with Ants while Ming was still at school;
  • that I had discussed nursing home/lodge possibilities with Ants earlier (he was assessed as a candidate for ‘high care’ over four years ago); and
  • that I had broached the subject of death with both of them earlier.

Bubble and Baby Turkey are inseparable but I think this is because, initially, there were four Bubbles and four Baby Turkeys and (except for these two) the foxes got all of them when they were littler despite my vigilance.

Ants, Ming and I were inseparable too until Parkinson’s disease began to steal pieces of our jigsaw. Ming took a few leftover pieces, went into his room and shut the door; I tried to find some of the pieces of a blue sky, but they all looked the same; and Ants never liked jigsaws in the first place.

This photo was taken a few years ago when we were inseparable.

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Love story 109 – Cold

I find it almost impossible not to worry about Anthony, especially in the evenings. I ring and speak to him every evening and he is often confused. Tonight he said he was still in town, that he was really cold, then asked me when was I coming to pick him up. I jollied him out of it by saying that the nurses would put him to bed soon and I reminded him to ask for an extra blanket. I managed to reassure him.

I could hear the grin in his voice when I said, “Okay, schnookums, see you tomorrow”, and he said, “Goodnight baby, I love you.” He was unhappy when I rang but happier when we finished the call. Phew!

A few minutes later I began to worry about him being cold, about whether the nurses putting him to bed would be gentle, about his nightmares and even about how tomorrow would pan out before I got in to town to see him. Usually I don’t let myself worry like this. Usually I make myself believe that he is okay because, as far as his physical care is concerned, he is in very good hands and the nursing lodge is superb. But I worry about him being miserable and I feel so impotent at this time of the evening.

The cold thing is yet another symptom of how the Parkinson’s disease has affected his ability to interpret things like temperature.  He feels the cold terribly and has done for a few years now, even if it is hot. For example, he used to say his feet were freezing and I would feel them and they would be warm as toast. Conversely, he would sometimes say his feet were burning hot and I would feel them and they would be cool. It never seemed to match with the actual temperature and it became a constant night-time job when he was still home. It was always either a toilet or a temperature issue that caused him to call ‘Jules, Jules, Jules!’ until I got up and helped him out.

So that’s why I worry now. Does he call out for me in the middle of the night at the nursing lodge? Does anyone hear him? He isn’t good with finding or ringing his bell, or using the television remote or even dialling a phone number. One of the nurses says that he sometimes yells out, “You, hey you!” because he can’t remember anybody’s name.

I don’t usually let myself get worried in the night because it is too unbearable to wonder if he is okay. He should be asleep by now so there is a certain amount of comfort in that and he apparently sleeps very well now, so that is good. I don’t usually let myself miss him as much as I do tonight but sometimes I have to let the reality of what is strangely akin to a separation or a divorce to seep into my psyche and I almost stop breathing from grief.

He will never read this because his cognitive abilities are faltering, so all I can do is to say here what I say to him over and over every day: “I love you, Anthony.”

And please, God, don’t let him be cold.

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Love story 108 – Ming’s tail

From the ages of about two to four, Ming wore a tail. At first it was a skipping rope with one handle missing. I’d get him dressed and tuck one end into the back of his shorts and off he’d go. The rest of the rope would drag on the ground as he walked, ran and played. The tail became so much a part of Ming’s identity that if we couldn’t find it there would be a frantic search.

Anthony I got used to shouting desperately, from opposite ends of the house, “Have you seen Ming’s tail?” This became our morning routine!

During this period, even though he didn’t always wear it at home, there was absolutely no way Ming would leave the house without his tail attached. “Where’s my tail?” he would wail. Once, when we couldn’t find it, and then I remembered it was soaking in the laundry sink, I had to ring the pre-school teacher to say he’d be late because his tail wasn’t dry yet. This happened a few times so that even she began to see this as a perfectly normal excuse for being late. She told me once that she’d had to speak to the whole class about not touching Ming’s tail after it had been pulled out once too often and he’d dissolved into furious tears.

Inevitably, the skipping rope split and we had to find another tail, before the trauma of not having one left long-term psychological damage. Not to Ming – to me! I just couldn’t imagine him without his tail.

Ming was surprisingly mature about the disintegration of his old tail after I said that, of course, we’d get him a new one. “I’m sad but I’m okay, Mummy,” he said stoically. “I’m gwowing up, so I jus’ need a black furry one now,” he reassured me.

This happened on a Saturday, so I left Ming home with Anthony (well Ming wouldn’t come to town tail-less anyway). I searched the toyshops all morning in vain. Each time I asked, “Do you stock tails?” I’d get a bewildered response. I could have bought another skipping rope or any sort of rope, but Ming had graduated to black and furry and I respected that.

I rang Anthony who told me that Ming had been weird all day – not himself at all, quite moody, in fact. “He says he doesn’t feel good without his tail,” Ants said, laughing quietly.

We made the quick decision to give him a black woollen tie of Anthony’s that he had only worn once before anyway. “You’ll have to run out to the car when I get home so he thinks I found one in town,” I said. And that’s what we did. When I got home, Anthony and Ming raced to the car but Anthony won and secretly tucked the tie into my bag while we both told Ming to close his eyes and open his hands.

I put the tie into Ming’s hot little hands and he opened his eyes. He stared at it for what seemed like ages before he looked up at me, tucked the narrow end into the back of his pants solemnly and said, with serious joy, “It’s sooo wicked; look, Andony. Isn’t Mummy awfulsome!”

What a relief, and I took all the credit even though it should have gone to Anthony.

I wish Ming remembered these days.

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Love story 107 – Canny confusion

This afternoon, when I visited Anthony in the nursing lodge, he was confused in some ways and canny in other ways.

“You said you were coming earlier.” CANNY because I was a bit late.

“There was a wedding here this morning – awful people.” CONFUSED

“So who owns Bythorne now?” CONFUSED AND CANNY

“Is he trying to take it again?”CANNY because he remembers some of the horrible family stuff that happened when we got married.

“So where am I now?” CONFUSED

I haven’t seen Anthony this confused before. He even thought his beautiful older brothers, now deceased, were helping Ming and me out on the farm. But the thing that struck me most was his anxiety about another relative who had been such a bully that we had to banish him. That was the best thing we ever did, but the fact that Anthony is still worried about this and worried about me, and that his memories are so lucid about a situation that is long gone, disturbs me and breaks my heart.

As Anthony’s PDD (Parkinson’s Disease Dementia) progresses, will his memories of the bully dominate or will his memories of our blissful little family dominate? I don’t want him to be afraid and confused like this. I don’t want him to remember horrible stuff.

In my new Godzilla mode, I want to smash those horrible memories to pieces; they are now beginning to splinter into Anthony’s mind in such a disturbing way. Why else would he have asked the same questions again and again?

“So who owns Bythorne now?”

“Is he trying to take it again?”

My answers:

“You own Bythorne.”

“Not a chance in hell!”

Yes, I am a little angry.

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